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Help for Patients and Caregivers

Help for Patients and Caregivers

Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations, and prevention tips for patients and caregivers.
Alzheimers Diabetes Osteoporosis
Asthma Epilepsy/Seizures Parkinson's Disease
Breast Cancer Hepatitis C Sleep Apnea
CHF Multiple Sclerosis Urinary Incontinence
COPD Muscular Dystrophy Wound Care
Cystic Fibrosis Obesity  
     

Help for Patients and Caregivers : Sleep Apnea

What is Sleep Apnea?
Who Gets Sleep Apnea?
What Causes Sleep Apnea?
How is Normal Breathing Restored During Sleep?
What are the Effects of Sleep Apnea?
When Should Sleep Apnea be Suspected?
How is Sleep Apnea Diagnosed?
How is Sleep Apnea Treated?
For More Information


WHAT IS SLEEP APNEA?
Sleep apnea is a serious, potentially lifethreatening condition that is far more common than generally understood. First described in 1965, sleep apnea is a breathing disorder characterized by brief interruptions of breathing during sleep. It owes its name to a Greek word, apnea, meaning "want of breath." There are two types of sleep apnea: central and obstructive. Central sleep apnea, which is less common, occurs when the brain fails to send the appropriate signals to the breathing muscles to initiate respirations. Obstructive sleep apnea is far more common and occurs when air cannot flow into or out of the person's nose or mouth although efforts to breathe continue. In a given night, the number of involuntary breathing pauses or "apneic events" may be as high as 20 to 30 or more per hour. These breathing pauses are almost always accompanied by snoring between apnea episodes, although not everyone who snores has this condition. Sleep apnea can also be characterized by choking sensations. The frequent interruptions of deep, restorative sleep often lead to early morning headaches and excessive daytime sleepiness. Early recognition and treatment of sleep apnea is important because it may be associated with irregular heartbeat, high blood pressure, heart attack, and stroke.

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WHO GETS SLEEP APNEA?
Sleep apnea occurs in all age groups and both sexes but is more common in men (it may be underdiagnosed in women) and possibly young African Americans. It has been estimated that as many as 18 million Americans have sleep apnea. Four percent of middle-aged men and 2 percent of middle- aged women have sleep apnea along with excessive daytime sleepiness. People most likely to have or develop sleep apnea include those who snore loudly and also are overweight, or have high blood pressure, or have some physical abnormality in the nose, throat, or other parts of the upper airway. Sleep apnea seems to run in some families, suggesting a possible genetic basis.


WHAT CAUSES SLEEP APNEA?
Certain mechanical and structural problems in the airway cause the interruptions in breathing during sleep. In some people, apnea occurs when the throat muscles and tongue relax during sleep and partially block the opening of the airway. When the muscles of the soft palate at the base of the tongue and the uvula (the small fleshy tissue hanging from the center of the back of the throat) relax and sag, the airway becomes blocked, making breathing labored and noisy and even stopping it altogether. Sleep apnea also can occur in obese people when an excess amount of tissue in the airway causes it to be narrowed. With a narrowed airway, the person continues his or her efforts to breathe, but air cannot easily flow into or out of the nose or mouth. Unknown to the person, this results in heavy snoring, periods of no breathing, and frequent arousals (causing abrupt changes from deep sleep to light sleep). Ingestion of alcohol and sleeping pills increases the frequency and duration of breathing pauses in people with sleep apnea.

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HOW IS NORMAL BREATHING RESTORED DURING SLEEP?
During the apneic event, the person is unable to breathe in oxygen and to exhale carbon dioxide, resulting in low levels of oxygen and increased levels of carbon dioxide in the blood. The reduction in oxygen and increase in carbon dioxide alert the brain to resume breathing and cause an arousal. With each arousal, a signal is sent from the brain to the upper airway muscles to open the airway; breathing is resumed, often with a loud snort or gasp. Frequent arousals, although necessary for breathing to restart, prevent the patient from getting enough restorative, deep sleep.


WHAT ARE THE EFFECTS OF SLEEP APNEA?
Because of the serious disturbances in their normal sleep patterns, people with sleep apnea often feel very sleepy during the day and their concentration and daytime performance suffer. The consequences of sleep apnea range from annoying to life threatening. They include depression, irritability, sexual dysfunction, learning and memory difficulties, and falling asleep while at work, on the phone, or driving. It has been estimated that up to 50 percent of sleep apnea patients have high blood pressure. Although it is not known with certainty if there is a cause and effect relationship, it appears that sleep apnea contributes to high blood pressure. Risk for heart attack and stroke may also increase in those with sleep apnea. In addition, sleep apnea is sometimes implicated in sudden infant death syndrome.


WHEN SHOULD SLEEP APNEA BE SUSPECTED?
For many sleep apnea patients, their spouses are the first ones to suspect that something is wrong, usually from their heavy snoring and apparent struggle to breathe. Coworkers or friends of the sleep apnea victim may notice that the individual falls asleep during the day at inappropriate times (such as while driving a working, or talking). The patient often does not know he or she has problem and may not believe it when told. It is important that the person see a doctor for evaluation of the sleep problem.

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HOW IS SLEEP APNEA DIAGNOSED?
In addition to the primary care physician, pulmonologists, neurologists, or other physicians with specialty training in sleep disorders may be involved in making a definitive diagnosis and initiating treatment. Diagnosis of sleep apnea is not simple because there can be many different reasons for disturbed sleep. Several tests are available for evaluating a person for sleep apnea. Polysomnography is a test that records a variety of body functions during sleep, such as the electrical activity of the brain, eye movement, muscle activity, heart rate, respiratory effort, air flow, and blood oxygen levels. These tests are used both to diagnose sleep apnea and to determine its severity. The Multiple Sleep Latency Test (MSLT) measures the speed of falling asleep. In this test, patients are given several opportunities to fall asleep during the course of a day when they would normally be awake. For each opportunity, time to fall asleep is measured. People without sleep problems usually take an average of 10 to 20 minutes to fall asleep. Individuals who fall asleep in less than 5 minutes are likely to require some treatment for sleep disorders. The MSLT may be useful to measure the degree of excessive daytime sleepiness and to rule out other types of sleep disorders. Diagnostic tests usually are performed in a sleep center, but new technology may allow some sleep studies to be conducted in the patient's home.


HOW IS SLEEP APNEA TREATED?
The specific therapy for sleep apnea is tailored to the individual patient based on medical history, physical examination, and the results of polysomnography. Medications are generally not effective in the treatment of sleep apnea. Oxygen administration may safely benefit certain patients but does not eliminate sleep apnea or prevent daytime sleepiness. Thus, the role of oxygen in the treatment of sleep apnea is controversial, and it is difficult to predict which patients will respond well. It is important that the effectiveness of the selected treatment be verified; this is usually accomplished by polysomnography.

Behavioral Therapy
Behavioral changes are an important part of the treatment program, and in mild cases behavioral therapy may be all that is needed. The individual should avoid the use of alcohol, tobacco, and sleeping pills, which make the airway more likely to collapse during sleep and prolong the apneic periods. Overweight persons can benefit from losing weight. Even a 10 percent weight loss can reduce the number of apneic events for most patients. In some patients with mild sleep apnea, breathing pauses occur only when they sleep on their backs. In such cases, using pillows and other devices that help them sleep in a side position is often helpful.

Physical or Mechanical Therapy
Nasal continuous positive airway pressure (CPAP) is the most common effective treatment for sleep apnea. In this procedure, the patient wears a mask over the nose during sleep, and pressure from an air blower forces air through the nasal passages. The air pressure is adjusted so that it is just enough to prevent the throat from collapsing during sleep. The pressure is constant and continuous. Nasal CPAP prevents airway closure while in use, but apnea episodes return when CPAP is stopped or used improperly. Variations of the CPAP device attempt to minimize side effects that sometimes occur, such as nasal irritation and drying, facial skin irritation, abdominal bloating, mask leaks, sore eyes, and headaches. Some versions of CPAP vary the pressure to coincide with the person's breathing pattern, and others start with low pressure, slowly increasing it to allow the person to fall asleep before the full prescribed pressure is applied. Dental appliances that reposition the lower jaw and the tongue have been helpful to some patients with mild sleep apnea or who snore but do not have apnea. Possible side effects include damage to teeth, soft tissues, and the jaw joint. A dentist or orthodontist is often the one to fit the patient with such a device.

Surgery
Some patients with sleep apnea may need surgery. Although several surgical procedures are used to increase the size of the airway, none of them is completely successful or without risks. More than one procedure may need to be tried before the patient realizes any benefits. Some of the more common procedures include removal of adenoids and tonsils (especially in children), nasal polyps or other growths, or other tissue in the airway and correction of structural deformities. Younger patients seem to benefit from these surgical procedures more than older patients. Uvulopalatopharyngoplasty (UPPP) is a procedure used to remove excess tissue at the back of the throat (tonsils, uvula, and part of the soft palate). The success of this technique may range from 30 to 50 percent. The long-term side effects and benefits are not known, and it is difficult to predict which patients will do well with this procedure. Laser-assisted uvulopalatoplasty (LAUP) is done to eliminate snoring but has not been shown to be effective in treating sleep apnea.
     This procedure involves using a laser device to eliminate tissue in the back of the throat. Like UPPP, LAUP may decrease or eliminate snoring but not sleep apnea itself. Elimination of snoring, the primary symptom of sleep apnea, without influencing the condition may carry the risk of delaying the diagnosis and possible treatment of sleep apnea in patients who elect LAUP. To identify possible underlying sleep apnea, sleep studies are usually required before LAUP is performed. Tracheostomy is used in persons with severe, life-threatening sleep apnea. In this procedure, a small hole is made in the windpipe and a tube is inserted into the opening. This tube stays closed during waking hours, and the person breathes and speaks normally. It is opened for sleep so that air flows directly into the lungs, bypassing any upper airway obstruction. Although this procedure is highly effective, it is an extreme measure that is poorly tolerated by patients and rarely used. Other procedures. Patients in whom sleep apnea is due to deformities of the lower jaw may benefit from surgical reconstruction. Finally, surgical procedures to treat obesity are sometimes recommended for sleep apnea patients who are morbidly obese.

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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Public Health Service - National Institutes of Health National Heart, Lung, and Blood Institute
NIH Publication No. 95-3798, September 1995

FOR MORE INFORMATION
Information about sleep disorders research can be obtained from the NCSDR. In addition, the NHLBI Information Center can provide you with sleep education materials as well as other publications relating to heart, lung, and blood diseases.

National Center on Sleep - Disorders Research
Two Rockledge Centre, Suite 7024
6701 Rockledge Drive
MSC 7920
Bethesda, MD 20892-7920
(301) 435-0199
FAX: (301) 480-3451

NHLBI Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
(301) 251-1222
FAX: (301) 251-1223

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CAREGIVER TIPS & INFORMATION:
  • 10 Tips for Family Caregivers
  • Questions to Ask Your Healthcare Provider
  • How to Communicate with an Insurance Provider
  • Find a Doctor
  • Information on Seating & Mobility
  • Tips for Family Caregivers from Doctors
  • Care Management Techniques You Can Use
  • Compare Home Health Agencies in Your Area
  • Keep loved ones connected & updated!
  • Additional Resources

 


10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don't delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one's condition and how to communicate effectively with doctors.
5. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
6.Trust your instincts. Most of the time they'll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
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Tips for Family Caregivers from Doctors

  • Write questions down so you won’t forget them
  • Be clear about what you want to say to the doctor. Try not to ramble.
  • If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
  • Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
  • Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
  • Recognize that not all questions have answers—especially those beginning with “why.”
  • Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
  • Appreciate what the doctor is doing to help and say thank you from time to time.
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Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is "yes," you're not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

  • Gathering information from healthcare providers;
  • An assessment of your care recipient and the home environment;
  • Research into available public and/or private services and resources to meet your loved one’s needs; and
  • Ongoing communication between all parties to keep information up-to-date and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one's health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you'll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control - a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you're dealing. Reliable information is available from the health agency that deals with your loved one's condition and the National Institutes of Health. When using the Internet, stick with well-known medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:
  • Your loved one’s ability to function independently, both physically and mentally.
  • The availability of family and/or friends to form a support network to share the care.
  • The physical environment: Is it accessible or can it be adapted at reasonable cost?
  • Your other responsibilities — at work, at home, and in the community.
  • Your own health and physical abilities.
  • Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you've learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what's going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one's care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you'll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn't family caregivers?

Start advance planning for difficult decisions that may lie ahead. It's never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you'll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It's extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

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Seating & Mobility - As a caregiver, you need to be very understanding to the individual's needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. By becoming involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manner. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
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Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs, such as office on disabilities, elder affairs, or maternal and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower, and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

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East Tennessee Resource Center

Local Offices on Aging

Anderson County
125 Leinart St, Ste 3
Clinton, TN
865.457.3259
Blount County
3509 Tuckaleechee Pk
Maryville, TN 37803
865.983.8411
Campbell County
PO Box 1394
LaFollette, TN 37766
423.562.2948
Claiborne County
PO Box 326
Tazewell, TN 37879
423.626.9471
Cocke County
PO Box 768
Newport, TN 37822
423.623.1400
Grainger County
PO Box 191
Rutledge, TN 37861
865.828.3010
Hamblen County
841 Lincoln Ave
Morristown, TN 37813
423.581.5166
Jefferson County
1427 Russell Ave, Ste 1
Jefferson City, TN 37760
865.475.2222
Knox County
2247 Western Ave
Knoxville, TN 37921
865.524.2786
Loudon County
901 Main St
Loudon, TN 37774
865.458.5445
Monroe County
144 College St
Madisonville, TN 37354
423.442.2022
Roane County
141 Odd Fellow Cemetery Rd
Rockwood, TN 37854
865.354.0450
Scott County
2845 Baker Hwy
Huntsville, TN 37756
423.663.3212
Sevier County
1220 W Main St
Sevierville, TN 37864
865.453.8080
Union County
PO Box 387
Maynardville, TN 37807
865.992.3292

Local Govít Organizations

Knoxville, TN
865.215.5000
Knoxville, TN
865.691.2551
East Tennessee Area Agency on Aging & Disability Knoxville, TN 865.691.2551
Senior Citizens Information & Referral Service Knoxville, TN 865.546.6262
Tennessee Department of Human Services Knoxville, TN 865.594.5685
Knoxville Community Action Committee
Mobile Affordable Meals Service
Senior Nutrition Program
CAC Homeward Bound
Knox County Family Assistance Program
Family Caregiver Support Program
Knoxville, TN 865.546.3500

Local Senior Centers

Corryton Senior Center
9331 Davis Ln
Corryton, TN 37721
865.688.0510
Halls Senior Center
4410 Crippen Rd
Knoxville, TN 37918
865.922.0416
O’Connor Senior Center 611 Winona St Knoxville, TN 37917 865.523.1135
Strang Senior Center 109 Lovell Heights Rd Knoxville, TN 37922 865.670.6693

Local Support & Advocacy Groups

Knoxville
865.386.5962
Knoxville
865.544.6288
Knoxville
865.584.1668
6921 Middlebrook Pk
Knoxville
865.584.2999
Oak Ridge
865.835.3790
Maryville
865.980.4811
Maryville
865.977.5744
Knoxville
865.524.2786
Oak Ridge
865.835.5225
Knoxville
865.541.4500
Sevierville
865.541.4500
Oak Ridge 
865.541.4500
Elder Abuse & Exploitation Project
Knoxville
865.637.0484
418 N Broadway
Knoxville 
865.673.6540
Knoxville
865.524.7417
Knoxville
865.632.5884
Oak Ridge
865.483.1143
6030 Industrial Heights Rd
Knoxville 
865.694.4673
Knoxville
865.688.5481
Knoxville
409 Broadway 
Knoxville
865.525.9401
Samaritan Place
3009 Lakebrook Blvd
Knoxville
865.684.1880
3508 Maryville Pk, Ste E
Knoxville
865.579.5886
Oak Ridge
865.835.3810
Smokey Mountain Cancer Support Group
Sevierville
865.428.5834
Maryville
865.977.4739
Oak Ridge
865.835.3370
Nashville
615.885.3399
Knoxville
865.546.4661
103 S Gay St
Knoxville
865.524.3926


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